Hi fellow Chiarians, I'm Amber. My headaches started when I was 7 years old. They have been a part of my weekly, sometimes daily, routine since 3rd grade: go to school/work(now), get an afternoon headache, come home, and hope it wears off with time, ibuprofen, sleep, water, what have you. The other issues were soon to follow. I don't need to go on with the list of symptoms with you all, as I'm sure you're more than familiar with them. I grew up thinking migraines and headaches were interchangeable terms, but that was until I experienced my first migraine freshman year of high school. I now know that people who have never had a full-blown migraine will never understand how debilitating they are. Long story short, the first trip to the neurologist (Oct 2011) showed low-lying cerebellar tonsils 4-5mm on the MRI and an observation of mild scoliosis. A conservative approach of medicine and "cutting caffeine" was suggested, and things were better for a while. Trading caffeine in for water did help with regular dehydration problems, but Topomax was only a temporary band-aid. Now, 4 & ½ years after the first neurologist and 15 years after the symptoms surfaced, a neurosurgeon has been contacted and new MRI has taken place. I now show protrusion 12mm below the Foramen magnum, a syrinx in the cervical region, and possible formation of a second syrinx in the upper thoracic zone. Long story short, "THE surgery" has been scheduled for just under one month from now. I am so relieved to be given the hope of decreasing my symptoms after years of being written off as a hypochondriac or one who complains too quickly...all the while insisting that I've been experiencing widespread pain in so many ways and only being able to come up with "I don't KNOW why" as my best response. Needless to say, I am also terrified. I have researched outcomes- good and bad. My goal isn't to scare myself to the point of backing out of surgery, but to fully prepare myself as best I can.
So, here's the real reason I'm here: What should I expect???
I don't want to have any rude awakenings or ugly surprises I wish I'd knew to expect. While everyone is different and all the planning in the world won't perfectly predict how my procedure and recovery will go, I still want to hear from people who've done this firsthand. I am adding the link to the gofundme campaign my amazingly selfless sister created for me should anyone be willing to or capable of contributing to the upcoming expenses. I know each of you have had/are having costly Chiari journeys of your own, which is why I am here for mental support more than financial support, but I thought it couldn't hurt to drop it here just in case. Anyway, If anyone who's gone through the process has any tips, advice, warnings, what have you... Please send them my way. Anything from prepping for surgery the weeks beforehand, things to do the morning of, what waking up from surgery is like, pain management, the hospital stay, going home, getting back to work...anything!! Comments here or personal inbox messages are welcome. Thank you all for taking the time to read another's story and I wish you all the best with your own battle!
PS- I'm having trouble deciding whether my post would best fit under general, new member introductions, or surgery since I kind of fit into all three really..lol. I'm giving it my best guess and posting here!
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